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Author
Topic: A Call to Those HIV Seniors... (you know who you are) (Read 5313 times)

Well, I am back from my self imposed hiatus, and will make every attempt to spend as much time here daily to keep me abreast of the entire goings on here.

Lots has happened since I was last a regular here, and I will only be touching on it with my posts to each of you, rather than trying to re-count all that has gone on. I am also working on the Blog to bring everyone up to date.

I really wanted to touch a bit on some of the situations that have recently gone on here, and in doing so, make a request that some of you who are now firmly planted on the “Guest List”, log back in and start to contribute again. I had a good conversation with one of the site managers, and found out that they are making every attempt possible to keep the forums from becoming a place that is uncomfortable for any of the membership. Obviously this is a really difficult job, as there are literally thousands of members, and keeping track of every post in every forum is not easy, or possible. What we need to do is to make sure that whenever things are going slightly askew, we need to let them know so that they can keep track of the situations as they evolve. It is obvious that some members tend to like being negative and mean, and these folks are sure to be dealt with in the future, but we still need to keep on top of each situation so that others don’t suffer indignation, due only to their own stuff.

I am making this post to plea with all the ones that I have grown to love and admire, due to their own struggles and victories with HIV/AIDS. This website, and these fora, need you and your experience. I know that in the past that some of us have been “raked” over the coals as being Dinosaurs, The Geritol Set, Non Relevant, and just plain Out of Touch with the New population of HIV+’s. Reality shows that those statements are more than wrong and we are truly a needed resource in this modern age of HIV infection. Our experiences are priceless to those who are new to HIV, and our combined knowledge about this disease, and how to live with it intelligently, are a resource that make this one of the richest sites on the web.

Lord knows that I am one that is more than sensitive to negative inputs from those who couldn’t possibly know how, what I am donating, contributes to your life when living long term with this bug. However, I would caution you that are HIV naïve, to look at the contributions of those who have years of experience with HIV as not being outdated, nor should anyone mistake their experiences as things that will certainly, or maybe less certainly, happen to you; but are placed here for your information. I have contributed many times in the past, with information that has been drawn from my own personal experience, only to be told in responses that my “opinion” is invalid in this new day of HIV/AIDS. Hell, who is qualified to diminish my “PERSONAL” experience. Nobody, I would say, except me.

So, for those of you who have been forced to feel invalidated, or sidelined by the “New Face Of AIDS”, please return to the conversation. Your absence is very noticeable, and the level of “real” HIV experience is sorely needed in these forums, to keep the level of knowledge up there with the very best we can offer. We are, after all, the only line of information to many of these new infected, and when they pose questions that are real and valid worries about HIV, and the only response they get is “Please Get Well Soon”, well, this just isn’t acceptable. NOT that those messages are not totally valid and an expression of true concern for those suffering, it is just that we are actually remiss if we don’t get back involved in the dissemination of true and useful information to help those who are really fighting for their lives. If this is truly a Support forum; then it is our responsibility to be one of those that offer true and useful support.

I have been watching Matty, Jonathan and Lis’s threads with real concern and worry, as they are literally struggling to stay alive, and most of the new membership don’t even realize that they might be watching someone die. How very sad if we all who are qualified and capable; just stay silent, due to our own daily struggles. These people in these forums need our help, our knowledge, and they need to know that many of the membership of these forums are actually struggling to stay alive, and not just worried about drug side effects and whether or not to stay home from work. Lis, Joe, Nancy, Fishkernish, Bailey, Jonathan and many others that escape my feeble HIV encrusted brain; please return to the conversation. You are sorely missed so very very much.

Thanks for reading.

In Love,

Logged

The Bible contains 6 admonishments to homosexuals,and 362 to heterosexuals.This doesn't mean that God doesn't love heterosexuals, It's just that they need more supervision.Lynn Lavne

You have been missed! I have missed the others that no longer post here or that do not post as frequently as they did.

As someone fairly new to HIV/Aids (been 6 months) I need the experience and knowledge of the "dinosaurs" (your word Tim not mine) on these forums. I for one don't know how I would have made it these 6 months without you. You are needed here more than you realize.

I have been on this site, just about a month now, and I cherish the word of those that has been dealing with this virus for awhile. I understand that the things some go through may not happen with me but it's always good to get a heads up. I take the knowledge I gain here and share it with others when the HIV topic arises.

I agree with Moffie, wherever you are, dinosaur or not, please come back. Don't let the pettiness of some keep you away from those who needs your wisdom and experience.

Glad you're back, and thanks for the explanations/clarifications. I think some of us had just reached the 'saturation' point with all the negativity and nastiness, but hopefully "this too, shall pass".

Like you, I'm worried about Matty, Lis & Jonathan, as well as a couple of other folks who have major issues that they have not disclosed in the forums. I've been struggling since we got back from Montreal, to get my cardiac condition under control. My blood pressure and pulse rate is up and down like a yo yo.We have doubled my Coreg (for Congestive Heart Failure) and added another drug, and I see the cardiologist for yet more tests on the 30th of Nov.For those who may not know or remember, I contracted bacterial endocarditis back in the 90's when I had no immune system (pre protease era), and it damaged my heart muscle.

Old and new alike have much to contribute here, so everyone let's please keep it going! This is my only form of support other than friends and family.

Hugs,Alan

Logged

"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

If this is truly a Support forum; then it is our responsibility to be one of those that offer true and useful support.

Hello Moffie,

It is ever so good to hear your "voice" back on these forums. Truly there is a "purpose" for each and every one of us, just as well there is a "purpose" for this site. It is up to us as a group to help with fulfilling that "purpose". Support each other.

Well, from one senior to another.....I appreciate all that you do and say to help others, Tim. I need support as you do and finding that support is a wonderful thing. I have lost so many of my friends to HIV and other causes that I am almost the last one standing...so to speak. So, coming here and seeing that everyone is doing the best they can, in some not so great situations, is inspiring . Thanks for your support Tim.

Glad you are back Tim! And thanks for reminding me this is a support group. Almost forgot. Nice to see you back. I hope The newbies and the oldies can respect EACH OTHER so we can all learn from each other. I know I have learned so much from all ages. I am seeing someone (yeah it's true who is been poz for one year. I told him jokingly I wouldn't hold his lack of experience against him. And of course, he agreed to not hold my 22 years against me LoL. My point is, we are all in this together. Hiv is HIV, it doesn't matter how long you have had it. We all must fight the same battle. We can all learn from each other. And I truly believe we can all be better off in the long run if we SUPPORT each other, rather than fight.

If it wasn't for you "Old dinosaus" I wouldn't be where I am today, or doing what I'm doing...there is not a day goes by that I don't silently thank you all for the information, the encouragment, and inspiration you all gave me when I arrived here as a newbie 4 years ago.

The newly infected need you guys..they need your wisdom and experience, I hope you won't let them down...lets get this back to being what it started off as...a support forum.

Those of you who know me know that I'm an old "newbie". I'm 56 years old but only 5 years Dx.

This place is my stronghold and my support system. I have met many great people here. I have also met some who have let me down. I only concentrate my focus on the former. The others seem to have problems with dealing with the "heat in the kitchen" and have build their own new one. This is good for all of us. Let's wish them a long and happy life and let's move on.

I personally miss two very special fiends that have not had anything to say lately. Dear Jim and Mike, if you are still reading here, please post so we know that you are okay. You both offered so much to this group and I know that you both have so much more to share. I miss you guys.

I am saddened by the recent events that have occurred here on the forums. Personally, I feel that the forums are a place in which we can support each other as we face each day with new problems, new exciting news and just being there for this wonderful family. I welcome everyone with an open heart.

I expressed my feelings, in Dachshund’s thread, (Your thought’s on Time Out’s?) to Peter about how this forum has changed.

Part of my Quote:

Peter,

AIDSmeds.com, years ago use to be about, (Well at least for me it was.) AIDS and the Medications/treatment/side-effects/support available. It was not whether a person was male, female, gay, straight, intelligent, dumb, young or old, black or white. It was more about obtaining the hard to find information pertaining to dealing with, living with, and surviving HIV/AIDS.

I agree that this site would be a lot more enjoyable if it went back to being a support/group type forum and a little less about having to constantly stroke the ego’s of some members.

Myself, I have learnt quite a lot from the younger members in here. (Some of which have been HIV+ almost as long as I have.)Their compassion and understanding for their fellow human being, at times leaves me speechless.

And then at times I’m disappointed at the lack of compassion from others.

I was brought up to respect experience and was taught that from it comes true wisdom and knowledge, this has proved to be true in every aspect of my life so far and the only time that I couldn't ever accept it was as a petulant teenager. (yes I can remember that far back, heehee)

I have gained a great deal of information from you "Dinosaurs" on this site and hope that I will always do so, gradually I suppose, with luck and some good living becoming one myself. I believe that the people here who have disrespected you and "hauled you over the coals" are a minuscule proportion of the members here who have been helped with knowledge, support and comradeship from the members who post on these pages. Please try to understand that some of the younger members have never known, or had any experience of the early years of this disease and that some of them are lulled into a false sense of security by the information given to them by their Doctors and support workers, i.e. "take the meds and you will probably live a normal lifespan". Exacerbated by reports in the popular media that this is now the case they are quite likely to have the opinion, that many of the problems suffered by you and others either now or in the past will never apply to them, what they don't realise of course is that possibly they will.

I think that one of the things which makes this forum so inviting to me is the diversity of it's members, gay/straight, male/female, young and old and all combinations in between from all over the world which gives some real life to discussions and also ensures that the information and advice given is more likely to be accurate and relevant and provided from different perspectives.

I know that it is difficult to stay in a place where somebody is always having a go at you but please stay around for all our sakes, we need you it's just that they don't realise it yet; they will grow up ----------------eventually.

Thank you for showing up again.You know, distance and location may physically keep us apart, but energy doesn't care about these boundaries.

I can feel you back here and I am relieved to find you in good spirit.

We, the dinosaurs, are the Shepard's of the newly infected, I think.Showing the way, being life proof that HIV can be survived, but also showing the scars that so many years of HIV ( 20 years for me) left on each of us.

This site is like a tide to me. Some days I get drawn to it, on others I get swept out to the sea of life. But I always return.

... this site would be a lot more enjoyable if it went back to being a support/group type forum and a little less about having to constantly stroke the ego’s of some members.

Some recent unpleasantness aside, I don't feel this place ever stopped being a supportive one. Granted, I've only been here for the last six months, so I can't comment on what it might have been like before then. However, I still see lots of information and experience being offered and exchanged. I don't feel that I have to understand or take to heart everything that is said here. Maybe that's why I'm able to continue to feel good about it all. When members express themselves poorly, I chalk it up to the real-life issues to which Alan alludes, of which I may not be totally aware. Sometimes people just need to vent and I recognize that this is a convenient and safe place to do just that. While I may not always know how to process those outbursts by chiming in with a few words of experience or observation, I know that there are others more adept than I who will step up and speak out.

As long as there is a respect for person, attacking only the positions and never the person behind them, I cannot fathom that this place will do anything but continue to thrive.

I don't know if I'm a dinosaur, although I usually feel like one when discussing meds.

Sharing our experiences and knowledge is critical for those recently on this path. As you said, it isn't meant to dictate what course people must take, or to predict with absolute certainty what anyone's future holds. but to give insight gathered through our years walking our path.

Tim,I am glad your back! I hope others follow. I also want all of those "dinosaurs", and the newbies to know I value their posts, their knowledge and experience that they share here.

I guess I would be a newbie dinosaur, being here less than a year but poz for 13 years. I learn something new everyday here, and the support has helped me deal with it all. I am no longer alone with hiv.

Let's have the truth, the whole truth and nothing but the truth. Nothing is quite as powerful. As an HIV newbie I say we need to hear from ALL positive people - pun intended! Christine, maybe you can be a newbisaur

Sharing our experiences and knowledge is critical for those recently on this path. As you said, it isn't meant to dictate what course people must take, or to predict with absolute certainty what anyone's future holds. but to give insight gathered through our years walking our path.

I certainly didn't expect to see so very many responses this morning, but here they are.

I just want to thank all of you who responded with such positive thoughts and some like Iggy's who were so very well thought out and completely moving contributions to this thread. I happen to like it when we all share our thoughts with each other, as it tends to strengthen the relationship we all have together. This has been a very good thread in that sense, and I thank you all for coming in and sharing your feelings and thoughts.

In Love,

Logged

The Bible contains 6 admonishments to homosexuals,and 362 to heterosexuals.This doesn't mean that God doesn't love heterosexuals, It's just that they need more supervision.Lynn Lavne

Well iI for one am greatful for you all. I need your knowledge and wisdom of what is happening to me.My husband asked me lastnight why I come on here and I said to him, I need these peopleeveryone for the most part is comppasionate and loving,I feel like I could be apart of something.It seems funny but I feel like I can get my strength from all of you.It's been 2 yrs since being diagnosed and sometime I just get so angry.Then I come on here and I get a sense of piece,like I'm not alone in this. And of course I need to ask my silly questions all the time.lol...THANK YOU OLD TYMERS..LOL...

It really sucks that the room has become "toxic", a word someone used from a previous post. I have only been here since this past October so I really don't know who the older set is unless they make themselves known. I refuse to let someone run me from this forum because they may have a negative opinion or always has one. I read their posts like I read everyone else's.

I do not diminish anyone's experiences but instead take heed to it because it could happen to me. Or if someone has had a bad experience and wants advice, I share and in my cases, I usually state that it is solely my opinion. It is up to the person whether they decide to follow it. I do not expect anyone to agree with what I say but it is appreciated when folks do, all this tells me is that we tend to think alike on certain things.

What has disturbed me, is how people have gone to singling people out in the forums if they are incorrect about something or has a difference of opinion. Is this being done to belittle another, sometimes I wonder when there is the PM feature.

Just because I may be HIV naive does not mean I do not have anything to contribute. I may be naive but we all have been at one point but some seem to overlook this fact. It's almost like because you may have experienced more or has more medical knowledge than myself, am I suppose to be inferior? Um, last I knew, we all have the same virus....Hello?

In my opinion, I think we all are here to educate each other. The newly diagnosed may learn about something new that we 'old timers' may not know about. And us 'old timers' can help guide the newbies through the rough parts of early stages of diagnosis, drug reactions and interactions, dating, family life, etc.

So, remember to continue to respect each other and move forward.

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The reason angels can fly is that they take themselves so lightly. ~ Chesterton G. K.